Why I became an endo warrior

I seek leave to amend the motion relating to endometriosis in the terms in which it appears in the Notice Paper.

Leave granted:

Ms BRODTMANN: I move:

That this House:

(1) notes that:

(a) one in ten Australian women have endometriosis, a disease in which the tissue that is similar to the lining of the womb grows outside it in other parts of the body;

(b) there is a lack of understanding in the Australian community about endometriosis and the impact it has on women’s lives;

(c) the disease can lead to extreme pain, infertility and other complications related to the bowel, periods, headaches and a variety of other symptoms around the body;

(d) there is a delay in diagnosing endometriosis of up to seven to ten years because the symptoms are variable; and

(e) University of Sydney research has shown that endometriosis costs Australia $7.7 billion each year—two thirds of this is in lost productivity and the rest is in direct healthcare costs; and

(2) calls on the Australian Government to end the silence about endometriosis by raising awareness of the disease and its symptoms across Australia and promoting further research.

My connection with endometriosis began in the 1980s when one of my best friends from high school was diagnosed with this insidious disease. It wasn't until March this year, when I shared my friend's experience at an Endo March high tea with an audience of about 100 Canberrans, that I joined the Endo Warriors. We have many Endo Warriors here today—some from Canberra, some who have travelled all the way from Sydney—to hear debate on this motion. Thank you so much for being here today. After speaking about that event in parliament, I posted the speech on Facebook and I was overwhelmed by the response. The views of the speech went up by the hundreds into the thousands in minutes. Comments flowed in from across the country and from overseas—from New Zealand, from Canada, from Brazil. I heard from hundreds of women and mothers and fathers who bravely shared their heartbreaking stories—stories that seemed to be being unleashed for the very first time. We heard of the misdiagnosis, the myths, the hysterectomies, the endless operations, the lost opportunities, the cost and the dreadful, dreadful pain, and of the daily struggle to take control of their lives.

Each and every one of the people behind me has a similar story. This is one recent story I heard: 'When I was diagnosed in 1981, so little was known about the disease. They called it the nun's disease. My doctor wasn't able to tell me much. I was prescribed testosterone tablets at $100 a bottle. I was told the only cure for endo was pregnancy.' From Katie: 'I work for myself and can't take days off. Having just spent days in agony not working, as I do for every month, for the last 20 years, the questioning by three different people at the pharmacy is embarrassing enough, let alone having to explain that my bowel is attached to my uterus and my surgery isn't until sometime next year.' From Samantha: 'It nearly killed me twice in a matter of months and my entire life has changed because of it. I've had 10 laparoscopic surgeries, one perforated bowel, another three corrective surgeries, a lot of scars, 18 months of hell and what will probably be a lifetime of pain.' From Jenna: 'Now, at 29, I have to have a hysterectomy. The amount of money that has been lost so I can do day-to-day things is astounding.' From Michelle: 'How about not being diagnosed until you are 53 and then it's not just endometriosis but it's grade 4. And in my 30s being told by a male doctor to go home and have vigorous sex to burst a possible ovarian cyst. I am a mess and will be needing a partial bowel resection along with a hysterectomy.

Since that first speech I have shared many stories like these in parliament on a weekly basis. I have shared these stories because they are the most powerful way of communicating the emotional, the physical and the professional toll of this insidious disease—the toll of this disease on the individual, the toll on the families, the toll on the friends, the toll on partners, the toll on the nation. I have shared these stories because I have been confronted and deeply moved by the tragedy of this disease. I've been confronted by the horror experienced by women, with beautiful young bodies, when they see for the first time the scars from their first operation.

I've been confronted by normally fit women with enormous potential being dubbed the sick person in the office. I've been confronted by the erosion in self-confidence and self-esteem that comes from a life of pain, uncertainty, fear, constant interventions and not being taken seriously. I've been confronted by the amount of radical operations inflicted on women, often at a very young age. I've been confronted by the lack of understanding and discrimination that exists in the workplace. I've been confronted by the lack of intimacy in relationships because sex lives are ruined by pain and endless bleeding. I've been confronted by the financial burden when women should be saving for first cars, new furniture for their rental, a deposit on a home, a trip overseas with their family or a holiday at the coast.

I've been confronted and deeply moved by the fact that so many women feel so alone and so frightened. They feel voiceless and powerless. I've been confronted and deeply moved by the courage of these women and their family and friends to share their experiences. I've been deeply confronted by the ignorance that this affects one in 10 women, which is why I will speak again and again on this issue.

After the member for Boothby heard one of my speeches in the chamber, we paired up to establish the bipartisan Parliamentary Friends of Endometriosis. We're looking forward to launching the friends next month. We're looking forward to working with the endo community to deliver change. We're looking forward to working with the endo community to show that they are not alone and to end the silence about endometriosis, this insidious disease, that is affecting one in 10 women in Australia each and every day.

The DEPUTY SPEAKER ( Mr Buchholz ): I call for a seconder of the motion.

Ms Vamvakinou: I second the motion and reserve my right to speak.

The DEPUTY SPEAKER: Before I give the call to the honourable member for Forrest, I acknowledge the members in the gallery here and welcome them to the parliament.

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